Perilymph Fistula
 

I've been doing research on Perilymph Fistula, and came across this site - www.perilymphfistula.com.
Really liked how he described his struggles with PCS, will be on my list of things to send to people close to me who don't really get what I'm going through.

Anyone had this diagnosis?

Many symptoms correlate to what I'm experiencing, especially fluid in ears, sensitivity to vibration/bumps, etc...

I plan on getting a referral to a local doc who can do proper vestibular testing, I think I should've done that a long time ago.

Went to see a local Otoneurologist today and he thinks that's what I have.
He was surprised that I even heard of this diagnosis, let alone actually knew what it was.

Will be doing several test over the next few weeks to confirm.

Not sure why I didn't insist on seeing a dizziness specialist before, but oh well.

Quick update on this.
Did a bunch of tests (rotating chair was a "fun" one), and the doc says I don't have the fistula, but probably have Meniere's disease.

Doing a couple more tests this week and will see the doc next week for final results.

Kind of weird to hear about Meniere's since I don't really have issues with vertigo, I only get it very occasionally for a split second.

Another update.
Did a couple more tests and now doctor thinks that there's a high probability that I do have a fistula in my right ear. He wants to do a surgery to repair it.

Going to try and find another doctor to get a second opinion on this, but looks like we're limited up here in Alaska, since he was the only one I found when I initially did my research.

I guess at this point I'll probably do the surgery. Will let you all know how that goes in about a month.

All the best for the surgery.
It's amazing that was found and I hope that once the fistula is repaired that it helps heaps in alleviating some of those symptoms!

Had the surgery a week ago, went back for the post-op with the doc today.
Surgery itself was kind of "fun" since I ended up being awake during the whole thing (they only gave me "twilight sedation", but I guess most people supposed to fall asleep). I felt the pain which wasn't too bad for the most part, but the drugs kind of make you not really care about it. I was joking with the nurses or at least trying to, I don't think I was making too much sense as they politely asked me to keep quiet :)

Pretty much slept for two days after that coming off of all the drugs, everything was kind of a blur.

As far as symptoms go, so far I think my eyes are doing better, but I've been relaxing and not working on computer, just watching TV and playing on an iPad, so hard to tell.
Been really dizzy/unsteady all week which has been improving every day.
One thing that got worse is the tinnitus in the operated ear, it's fairly loud.

Supposed to go back for a follow up in about 4-5 weeks and they will retest the ear for the fistula to see if the grafts worked.

dont need a doc for vestibular assessment
 

Hey! Nice to meet you.

you don't need a referral to a doctor for a good vestibular assessment.
*edit*. from experience, a certified physiotherapist or occupational therapist will take 45-90 min just on your physical exam. a doc doesn't have that kind of time.

perilymph fistula isn't that common...I would go after a vestibular dissonance first...but a vestibular therapist can help you with a differential diagnosis.

I've gone to two physiotherpists so far and the first one was totally clueless, did some basic tests, couldn't really figure out what's wrong with me and said that he will have me back riding snowmobiles in two months...
Another one was a little more knowledgeable and suggested that I have a "textbook example" of cervico-ocular reflex problem. Gave me some exercises to do at home for my neck and for eye-tracking. It didn't really do anything for me and I stopped going after about two months after I had another setback.

Been just over a month since the surgery, I recovered to about my pre-surgery level in terms of symptoms. Still dizzy every day from walking/driving/moving around. Still have issues with computer screens, insomnia, etc.
So either somehow I screwed it up or it wasn't the issue in the first place.
Oh well, I guess that's how these things go.

Figured I leave this here for others researching perilymph fistulas.

Man that sucks to hear that the surgery didn't help. I hope you start recouping and find out what's troubling you. With this whole PCS thing it seems like no matter where you are you're pretty much left to try and figure things out on your own